A Little About Me...

My name is Pam. I'm 32 years old and I live in Southern California. I was diagnosed with DBA when I was 6 months old. My dad was diagnosed when he was 32 years old and my mom was 2 months pregnant with me. They were told that I would in no way get this disease. Well they were wrong!

I had a few transfusions (maybe 5 total) from age 6 months to 3 years. I was put on a short course of Prednisone at about 1.5 years old and that seemed to do the trick. At age 9, after multiple unnecessary bone marrow biopsies and CBCs - the folks at the City of Hope National Medical Center declared me " cured". Unfortunately I was just in remission.

I came out of remission in the summer of 1999. One day after work, I was walking to my car and had severe chest pain. My parents both have major heart problems and so the next day I got a full work up. They discovered that my Hemoglobin was under 11 and referred me to Dr. Feinstein at the USC Norris Cancer Center here in Los Angeles. I've been a patient there since.

I've had less than 15 transfusions in the last 5 years. My most recent one was in the middle of June with a Hgb of 8.6. I'm getting another one tomorrow as my HgB is now 7.0 and I'm very symptomatic (with chest pain, extremity fatigue and major headache).

I lead a full life - I'm married and work full time. I attend classes at the local Junior College when I have the time. I have a Bachelor's Degree from USC (Fight on Trojans!) and I was very active during my time in school. We think that I came out of remission due to an incredibly stressfull job in 1998 - it just took a real toll on me physically and mentally.

My father passed away in February of 2001 after dealing with DBA, Diabetes and other heart problems.

I hope this blog is informative to other folks dealing with this - feel free to drop me an email if you have any questions!